I fell apart tonight in my families' class. She was lecturing about how self-esteem for families of special needs kids is an issue and she read us quotes from a friend of hers she'd interviewed that said that it was particularly validating when a professional recognized what a good mom she was. It hit me how little validation of that nature I've had.

I think the double punch was the further commentary about how this parent never felt like their day was done -- how she'd stayed up half the night with her sick child and hadn't gotten to writing letters to politicians voting on issues critical to the services the government might provide her son and how she felt like it was her responsibility to know IDEA inside and out and to be the ultimate advocate for her child.

That did it.

I had to leave for a half hour and bawl my eyes out. I sat and talked with the department secretary who knows a lot of the stuff I've been going through and she gave me hankies and we just talked. Afterwards, I went downstairs and stopped at the afterschool program where my reading tutee from last semester was and said,"Hi!" I then had 4 little girls 8-9 years old perform the school song because we're in the NCAA sweet 16. They did it to show me what they'd done to get on the local news channel. Then they wrote me a note telling me how it was at 525 on Channel 2. I hugged R. and went back to class.

Through class, I held onto that note and just remembered all the good I can do.

Somewhere in class, the professor talked about that having a kid with a disability is NOT a grieving process. A grieving process means that it ends and raising a child with a disability does not end. It's an ongoing process. She drew a picture of a spring. She said parents will spiral upwards and something will be said or done and they'll go back to the bottom of that spring again.

I thought about waiting for the professor and apologizing, but I decided I'd end up in tears again and I had to drive home, so I wrote her this email.


Sorry for having to leave for a bit.

I hit the bottom of that spring again tonight from
listening to the Tracy quotes. I am struck by how
little affirmation I have ever gotten from
professionals and in fact, how much deriding,
insulting, and implied crap I have gotten from not
only the schools, but my in-laws, while I have been
working my fool head off trying to figure out how to
help my son be the math professor or engineer that he
dreams about being.

Before medication, my son would have thermo-nuclear
meltdowns in public. When he was 3, I could pick him
up, put him in the car and drive away from prying
eyes. When he was 9, I had to pick up my 65 lb child
from the middle of the road, where he had thrown
himself in a tantrum. I asked him to sit on the car
bumper and I was physically, just getting him off the
road and pulling him to the bumper. Because he was
angry, he chose to stiffen his body and he ended up
splayed on the hood instead, screaming blood murder
that I'd picked him up off the road. People were
walking by looking at me as though I must be beating
my child, when I was just trying to get him safe and
calm. I finally got him to sit on the bumper and
after a 15 minute time out, he finally came clean and
informed me that he had lied and NOT taken his
medication. I had to ground him for a week because
that's the punishment for lying in our family, so he
screamed and cried more. I told him, he needed to
stop or I could not drive him home to get his
medication, which he obviously needed. He snuffled
all the way home and the entire way, all I could think
about was what a rotten parent I was. I couldn't get
the vision of him splayed on the hood out of my head
and how absolutely awful I felt and how awful he must
feel to be so out of control. I know in my head I am
not a bad parent, but I *felt* like a bad parent. And
how those pedestrians walking by looked at us will
stay with me forever.

Also, I often feel completely ineffective in my
advocacy for my son. I know I am getting better and
learning more all the time, but this is my son. My
beautiful brown-eyed angel boy being called "lazy"
and "unmotivated" just makes me sad. That means that
the school isn't recognizing the good things in him
and is not recognizing his condition, and
particularly, they are not noticing how bonebreakingly
hard he is working all the time, nor how hard we are
working with him, so he can live his dreams.

While the diagnosis of cerebral palsy will help some
of that, I am not always ready to deal with the pity I
see in people when I tell them he has cerebral palsy
and ADHD, any more than I was prepared to deal with
the school's complete ignorance about his ADHD before
his cerebral palsy diagnosis.

I would have stayed to talk, but after examining my
fragility level I realized I'd end up in tears again
and it took me a while to get calm the first time, so
I decided I'd write.

The neurology appointment for our first opinion is on
Monday. My root canal is Tuesday. In some ways, I
think the root canal will be a lot easier.